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Sperm donor passed on disease to nine children
A sperm donor passed on an inheritable disease to at least nine of the 43 children conceived using his sperm in 14 different fertility clincs.
And at least two children were conceived using his sperm in the six months between when the sperm bank Nordisk Cryobank, which has offices in Frederiksberg and Aarhus, was first warned and when the sperm was withdrawn. One of those children was born with the disease.
The revelations, made last night on the TV news programme '21 Søndag' on public broadcaster DR, have lead to the health authority, Sundhedsstyrelsen, tightening sperm-bank regulation.
The move is little consolation to Lone Søndergaard, mother of one of the affected children, however.
“I thought the system was designed to protect against inheritable illnesses,” Søndergaard told DR. “It’s just unacceptable that there is no oversight."
The nine children were born with Neurofibromatosis type 1 (NF-1), which creates non-cancerous lumps on the bodies of affected individuals. The severity of the illness can vary widely, but in its most severe form it can lead to learning difficulties, blindness and epilepsy.
According Anne Marie Vangsted from Sundhedsstyrelsen, some of the illnesses could have been prevented if Nordisk Cryobank had withdrawn the sperm immediately after receiving the first warning.
“We know that children were conceived during that period and that could have been prevented if the sperm bank had acted correctly and stopped using the donor sooner,” Vangsted told DR.
In June 2009, Nordisk Cryobank received the first warning that a child conceived using the sperm had been born with NF-1. According to Sundhedsstyrelsen’s rules, the sperm bank should have immediately stopped using the sperm and contacted the clinics that had bought it.
But according to Nordisk Cryobank's CEO, Peter Bower, the sperm bank didn’t act immediately because they thought the donor was not responsible for passing on the disease.
“It’s something that our doctors and geneticists looked at and decided that there wasn’t a substantiated suspicion against the donor,” Bower said.
NF-1 can arise spontaneously in children of parents that do not carry the genes responsible for the disease.
Bower said that Nordisk Cryobank had now changed their protocol to follow Sundhedsstyrelsen's guidelines. However, Dansk Folkeparti's health spokesperson, Liselotte Blixt, told Ritzau that this was a case of too little, too late.
“The sperm bank should be shut down by the health authorities for not following the relevant safety procedures," Blixt said. "This should not be allowed to happen.”
A law that takes effect on October 1 will reduce the number of women that can be impregnated using a sperm donor down from 25 to 12. The donor who has passed on NF-1 fathered 43 children, despite the current limit of 25.
The law will also require sperm banks and fertility clinics to act much more quickly and stop the use of sperm that could pass on an inheritable disease as soon as a suspicion is raised.
On a related note, sperm quality from men in Copenhagen has bounced back after a dramatic decline in quality. According to a recent study published in the British medical journal Open, between 2000 and 2010, the average sperm counts of 5,000 Copenhagen men rose from 43 million sperm to 48 million sperm per millilitre.